Thursday, April 11, 2013

The Ordinary Life

The last two weeks have been somewhat ordinary.  It's the first time ordinary has been around since January.  Two weeks ago we got the big shocker that Bennie's melanoma had progressed to his lungs, liver, hip bone, and his hip mass grew very large.  They put him on Zelboraf, and he has been doing great for two weeks now.  He goes to work, comes home later, looks normal, and life feels normal.  He has some joint pain, his eyes are super sensitive to sunlight, and has a bit of a rash.... but we can work with all that.  We would give anything to have the ordinary life we had when all we worried about was how we were going to mow the lawn, and get to the grocery store in one Sunday afternoon.  We went back to MD Anderson today to see how he was doing on this new chemo drug.  They said he is doing great, and upped his dosage today to see if he can tolerate it alright.  The Dr. probably thought this was going to be a quick visit, but alas we had different plans.  For two weeks we have drafted pages of questions, and we were anxious to get all of our answers today.  We were so shocked last week that we left without asking any questions.  The Dr. wants to do biochemotherapy in May.  This is not typically done while on Zelboraf, and we were quite confused. 

1. Zelboraf only "usually" works about 4-6 months (some people have been able to stay on it for 2 years) before it develops a resistance and finds another way to multiply, and the cancer will grow back with a vengeance. 

2.  Zelboraf is working great for Bennie right now, and in 2 weeks his hip tumor has shrunk from the size of a softball or bigger to the size of a golf ball.

3.  Dr.s know this dramatic improvement will not last, but some studies have shown that breaks of Zelboraf can help in the developed resistance... which would give him more time on this drug that works

So our Dr. came up with the idea of combining biochemo, and during the weeks of biochemo Bennie would take a break off of the Zelboraf.  There is no research on this... which is why we were so confused.  Only one other person has tried it out and he did alright.  But we have to be confident in knowing this is a good idea.  So, we may go for a second opinion at Moffitt Cancer Center in Tampa, Florida.  They have done some great research out there as well, and it will be nice to get another opinion on if this is a brilliant idea.  We need to be confident in going forward in the best treatment we can get.... because we only have one shot.  Biochemo will stink!!!! ( one week in the hospital at a time, 5 different chemos, and feel really really sick/crappy)  If it works... we can deal with all of it. 

Our other question was what if Zelboraf/biochemo doesn't work... whats next?  Her answer.... "well it depends on what's out there at that time."  Good grief... I told the Dr. that she has 6 months to find a cure... and she better start working more overtime.  This was an exhausting visit.  We were both SO anxious, because we knew we would get answers that we didn't want to hear. We pray that we will decide the right treatment to move forward with, and that it will work!!! Melanoma sucks. 

An analogy for the day... There are many different treatments to try, but you have to pick the one that is going to work for you... and pick it in the time before your disease wins.  It's like trying to pick out the chocolate in the box of chocolates that you like the best before you get full.  And you hope you don't get all the nasty ones before you find the one you like! That's in a nutshell what we are battling right now. 

Also, praying that Bennie can handle the higher dosage, and that it keeps working really really good for a really really long time.  ALSO praying Bennie's brain MRI comes out clear in 2 weeks.  We appreciate all the prayers and support!!!


  1. Praying for you to have the strength to get through these tiring and trying days. I love you guys! Keep those smiles going....a day at a time. HE will get you through this...Keep the Faith! Love you and hugs to the kids!

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